About

CSR Overview

The Center for SUDEP Research (CSR) is a National Institute for Neurological Disorders and Stroke (NINDS) funded Center Without Walls for Collaborative Research in the Epilepsies. This milestone-driven collaboration is composed of researchers from 14 institutions across the United States and Europe and brings together extensive and diverse expertise to tackle Sudden Unexpected Death in Epilepsy Patients (SUDEP).

The CSR's scientists and physicians investigate and elucidate these links with their expertise in molecular biology, genetics, histopathology, electrophysiology, brain imaging, data analysis, and more. The team will identify the molecular and structural brain abnormalities underlying SUDEP, utilize these discoveries to identify features that could predict and identify those at risk of SUDEP, and hone in on those targets for the development of potential therapeutic interventions.

The rate of sudden unexpected death in people with epilepsy is as much as 24 times higher than the rate of sudden death in the general population, with an estimated 2,750 cases of SUDEP in the U.S. alone every year. Recent research findings on the mechanisms underlying SUDEP have pointed to complex pathogenetic processes involving changes to the brain in people with epilepsy that disrupt autonomic nervous system function, leading to brain, heart rate and breathing dysfunction.

Overall, this investment by NINDS over nearly five years promises to catalyze research on SUDEP and dramatically enhance our understanding of this poorly understand and devastating phenomenon.

CSR Organization

The Center for SUDEP Research governance is carried out through partnership with NIH NINDS and is comprised of an Executive Committee and a Steering Committee. As a large multi-disciplinary, multi-center grant, the Center for SUDEP Research advances understanding of SUDEP under the guidance of both the Executive Committee and the Steering Committee.

NIH and NINDS

The National Institute of Neurological Disorders and Stroke (NINDS) is a part of the U.S. National Institutes of Health (NIH). The mission of NINDS is to reduce the burden of neurological disease—a burden borne by every age group, every segment of society, and people all over the world. The NINDS accomplishes this goal by supporting research that is timely and translational whenever possible.

Steering Committee

The Steering Committee consists of the corresponding Principal Investigator from
each Core/Project, the Directors, and the NINDS Scientific Program Officer. The chairpersons
are the CSR Co-Directors. Each member of the Steering Committee has one Steering
Committee vote. The Steering Committee has primary responsibility for the establishment of priorities,
development of common protocols, and review of progress for the center.

Executive Committee

The Executive Committee (EC) consists of 8 voting members:
the CSR Co-Directors (PIs Dr. Sam Lhatoo and Dr. Jeffrey Noebels), NINDS
Scientific Program Officer (Dr. Vicky Whittemore), NINDS Administrative Program Officer (Dr.
Brandy Fureman), two additional NIH staff, and two rotating members (one basic science, one
clinical) from the U01 corresponding PIs. Additional NIH Program staff members are
invited to participate as needed as non-voting members. Rotating members serve up to two year
terms and are nominated on an annual basis by the EC, and confirmed by vote of the
Steering Committee.

CSR Charter

The CSR brings together leading investigators, clinical and basic science projects, multidisciplinary technology and advanced resources to form a collaborative network dedicated to significantly reducing SUDEP mortality. This spirit of collaboration includes timely sharing of ideas without compromising intellectual autonomy, ownership, and credit.

Members sign the Charter Agreement and agree to a principle of transparency, with particular regard to future grant applications leveraged by CSR, and forthcoming peer reviewed publications, conference presentations, press releases, and other materials arising directly from CSR activities.

A key strategy is to provide each CSR investigator and research group with regular, expedited access to expertise and knowledge as well as core facilities that may not otherwise be available to them.

CSR members are encouraged to share any relevant activities that do not directly arise from CSR resources, cores or scientific projects. Our goal is a broader collaboration within the scientific community to advance knowledge about SUDEP.

CSR Cores and Projects

The Center for SUDEP Research is comprised of nine components: the Administrative Core, the Informatics and Data Analytics Core, the Morphometrics Analysis Core, the Molecular Diagnostic Core, and the five scientific U01 projects, listed below.